Medications

[JJackdaw]

Hi everyone and happy New Year to you all. I'm Just wondering, if left untreated what is the outcome of this disease other than possible blindness.

[PMRpro Ambassador]

You would probably feel pretty poorly - there are often systemic symptoms too, a bit like flu.

Depending on which blood vessels are affected you could develop a lot of other medical problems. The arteries become increasingly inflamed and that can lead to them becoming fragile and easily damaged - GCA patients are at an increased risk of developing aortic aneurysms anyway whether treated with pred or not. Another unpleasant effect on arteries could be the wall starting to split, called dissection, with similar effects to an aneurysm leaking.

The swelling of the small arteries in the brain can lead to ischaemia (lack of oxygen supply) and possibly even increase the risk of stroke. The ischaemia can cause dementia and in some cases that is a symptom of GCA. Swelling in other arteries can in the longer term can lead to something called peripheral arterial disease in the limbs, leading to poor oxygen supply to the legs in particular and in the longer term to death of tissue and gangrene, similar to that found in diabetes. This could also affect other organs such as the kidneys.

Often once the damage has occurred it is difficult to reverse, especially when the blood supply to nerves has been interrupted which can lead to neuralgia and neuropathies which cause extreme pain. This is what happens in the visual loss - but in that case once it has happened it is irreversible. If one eye has gone blind then in most cases the other goes too - that is why such high doses are used in GCA, particularly if there is already visual loss. It doesn't always prevent total blindness however.

[olive2709]

You and I joined this site about the same time .I started on 40mg and know take 22·5 dose will change at end of month. Everything pro said I can backup pred takes a toll on our body's but the alternative not good . At the moment feeling very good working towards 10,000 steps a day up to 6,000 before Christmas had a week off back to it today .

[PMRpro Ambassador in reply to olive2709]

Ooohh Olive - I'm impressed! I'm nowhere near that level of activity! Well done indeed!

[JJackdaw]

Thanks olive/pmrpro. I was just thinking about disease which started me thinking-what if.... so that's the reason for my question. I have to say pmrpro that your reply gave me my first tears in eyes laughter this year. So other than all those horrible could be's you listed, I'd be okay! Sorry for my sense of humour pmrpro but it struck me funny. Also well done olive and keep up the good work but don't overdo it.

[PMRpro Ambassador in reply to JJackdaw]

You don't work in the NHS do you? When I told my husband about your question his response was "Isn't going blind enough?"

There is generally a lot of pussy-footing about talking about what could happen if... So many people are terrified of the pred and there is almost a concept on the part of the medics that pred is evil and should be avoided at all costs. That communicates itself to patients and they maybe wonder what would happen if they didn't take it. But almost noone one tells them the possibilities when they do ask, as if we are all too delicate to be faced with reality. Even the info sites and forums are a bit gentle IMHO. I know one point of view is that people have already been hit with a load and are very fragile as a result. But if you don't say it here - where can you say it? Yes it could be scary - but as far as I'm concerned, what's a bit of pred in comparison?

Now - are there any more points we can have a laugh about? 'Cos either you have a laugh about it or you cry. And then you get all snuffly nosed and depressed...

[JJackdaw in reply to PMRpro]

Yes pmrpro, I have worked for many years with nhs and private companies but I am by no means a professional nurse - meaning I don't have "qualifications " just life experience and for all those years I never heard of this disease. However, I wasn't being flippant or making light of the illness I was wondering what if? I don't mean to upset anyone, but like you say, if you don't laugh you'll cry., and laughter is the best medicine.

[PMRpro Ambassador in reply to JJackdaw]

Oh no, didn't for a moment think you were being flippant - but I think when you see behind the scenes in the NHS we end up having a rather, shall we say, unusual view of illness. I do have to be careful sometimes, I admit.

Strange though, if you worked with the elderly at any point I bet you cared for people with PMR. But I will also bet they didn't know they had it either. Nor did their doctors.

[JJackdaw in reply to PMRpro]

You're right there pmrpro, for all the years I looked after elderly people it was always m e osteoporosis, hardening of the arteries, and a multitude of other ailments that weren't fully understood, but mine was not to reason ,why because doctor knew best ,so I just did my job. I've said before, all the medics I've seen over the years regarding my own ailments it's only this young doctor I have now said that I have pmr/gca. I'm feeling quite well now, pain wise, and I'm convinced that it's those Vit d pills I'm taking making me feel good. However, I do get very breathless on exertion. I Put that down to the pred.

[PMRpro Ambassador in reply to JJackdaw]

Did the pred have a "magic" effect? Because the PMR symptoms CAN be caused by very low vit D levels. The vit D supplements we get with the calcium would take months to get a low vit D up to where it made a difference to these symptoms though. GCA is another kettle of fish altogether - pred to avoid going blind is very important. Although you can have GCA without it ever touching your eyes - but I'm not sure I'd want to risk it.

[Hidden in reply to PMRpro]

That is very interesting to me apparently my bit d levels were very low so it's possible that once levels up symptoms may go so I might be more optimistic about reducing predict dose

[JJackdaw]

Yes the pred did have an immediate effect when I first started taking it back in August, but even though it relieved the pain I still felt unwell. Now I take the vitD I feel much better in myself.

[olive2709]

Breathless is something I still suffer from but found some help in a strange way hubby has COPD he was given a exercise handbook from the British lung foundation they have helped me strange one and 10 minutes on the Wii most days to help my balance as I was falling about as if I had been drinking .We have to have a sense of humour the more strange the better

In other words to use a army quote If you can't take a joke you shouldn't have joined ,

Olive

[PMRpro Ambassador in reply to olive2709]

Lots of people find PMR affects their balance - I used to fall over very easily and I also found it almost impossible to stand on one leg, even the physio commented about it but didn't offer any insight into why. I think I was just put done as "old and unfit" - in my mid-50s and when I was at the gym every day Mon to Fri.

My balance is back to normal now though.

[GreyOwl in reply to PMRpro]

PMRpro, your comments regarding balance problems describe my own balance capability perfectly. You say your balance is back to normal now so I take it the PMR is in remission?

I've been advised that my balance problems is down to muscle weakness and my physio is working on building up muscle strength but what is your experience? Is it the PMR actually affecting balance or is it the Pred causing muscle weakness?

[PMRpro Ambassador in reply to GreyOwl]

My PMR is only in "pred-induced remission", i.e. I don't have much in the way of symptoms at my current dose of 4mg. I tried 3mg for a few months and bicep cramp returned - so I don't think it has gone away yet unfortunately.

It is definitely the PMR affecting balance in a lot of cases - certainly was for me because it happened for the entire 5 years BEFORE PMR was accepted as a diagnosis so I had never been put onto pred! It has improved steadily since, except during the time I was switched to Medrol (a different form of corticosteroid, methyl prednisolone) which appeared to have no effect on me at all and within a few months I had developed the mother of all flares which settled down immediately I was switched to yet another form of prednisone, Lodotra.

We have had long discussions in the research group I am a patient rep in about what it really is - the medics insist it is NOT muscle weakness we have. We pointed out it may not be measurable weakness but the effect it has is much the same: we trip easily and cannot grip things properly and drop stuff a lot. I can remember being in tears because my hands just wouldn't do things I wanted them to. Opening any form of packaging was next to impossible at one time.

I suppose (it has just occurred to me) that what is happening is effectively claudication - the muscles aren't getting the oxygen supply they need to perform properly. "Building up" muscles takes a long time and must be very gradual - if I did even one or two reps too many of the exercises the physio here wanted me to do I was totally wiped out the next day, I had felt fine at the time, and that is the difficulty. I skied for several years with PMR - at the beginning of the season I could do only a couple of very short runs without pain the next day. I also could not ski on consecutive days. By skiing little bits on alternate days and with plenty of rests, by February I could manage a decent length run - but I still needed rests between. It was also worse if I was cold - the blood vessels were even more compromised by being constricted, a double whammy. If you try walking to build up your leg muscles (and it does work, never mind using the gym!) then 3x10 min walks are better than 1x30min in terms of recovery. I had used the gym a lot pre-PMR but I was able to do less and less with the machines and it really became a waste of money. I switched to a gym with a warm pool and, after discussing it with the instructors, did aqua aerobics classes at my level. That improved steadily until I could do everything everyone else did. I still couldn't do an ordinary aerobics class, even ones for over-50s. I couldn't swim much either.

[daphne_retired in reply to PMRpro]

Your reply on this thread, and indeed the whole discussion here, is extremely interesting. It describes my life in 2008, when the rheumy discharged me after one visit as she discounted RA. That summer, I could not lift a teaspoon, lift my arms, get off the toilet, clean myself, etc etc. Balance and walking problems came and went. Weakness in fingers, arms and hands. No help from anyone, and no-one believed me. My records show my visits over the years. I wonder what those GP's (four) would say if they read these threads. Soooo, my flares have been fairly regular over the six or seven years, the vasculitis appearing occasionally, and ignored, my continuous burning feet and toes, which sometimes can be acute, (may be claudication it seems reading this) always ignored by all GP's. Bloods always +RF, ignored, except 2008 visit to rheumy and discharge same day, (waited six months). This year GCA symptoms increased dramatically, so finally people are listening. If I rest between exercise in 10mins sessions, my abilities are optimised and that, I have taught myself, is best through my day. I can never sit for long, else I could not walk away. I must never stand for long, else it is difficult to walk away. I keep walking and then lay on my back with supports behind neck and knees. The electric blanket works wonders to reduce my morning stiffness, (that has always been a problem). Walking and cycling is best for me, as long as my 'standing on one leg' is a plus....I ALWAYS TEST THIS BEFORE CYCLING. Toppling over when getting up from chair is normal for me, over the years. Now I always tell the restaurant that I might fall into someone's table when I get up to go (once did). My pain moves around joints, usually in head and neck, ribs, feet, toes, hands, fingers, and shoulders, the intensity varies day to day. Paracetamol and NSAIDs have had no affect, so I gave up with those. This site has helped me to confirm my own diagnosis, I did not know the name PMR, but realised I have no joint damage it must be my blood vessels getting inflamed. The danger was/is, of course, I never knew about the effects of the inflammation.

''The prognosis is good'', to quote my rheumy in 2008, ''you are 60''. (Now almost 67).

Finally, this last few months my morning stiffness is easing, and my 'PMR' symptoms are decreasing I would say. BUT, the pain in my blood vessels has increased significantly. Thanks everyone for writing this thread. D

[Sallyaches in reply to PMRpro]

I think the balance test would have been very usefull to know about during the months I was getting increasingly stiff and in pain and being told by my GP "not to give in and try to do more each day whilst taking paracetamol for pain".

My balance became very poor even stepping up and down a kerb was a challenge .

I feel cross with myself for having such a low expectation of my health just because I was like you in my mid 50s.

It would be very quick to ask patients to stand on one leg and if it was too much work for the .G.P. I am sure the practice nurse could do it for them.

I am a bit disillusioned with G.P.s who love to lecture on lifestyle but don't listen or treat you when you are ill.

Sorry to sound negative but I have had a very rough time.

Good news have now got a rheumatologist who listens, and is great.

[PMRpro Ambassador in reply to Sallyaches]

Yes - I had a fairly pathetic experience with GPs - but had 4 totally useless consultants who caused me a lot of trouble and pain. Since 2 of them were close colleagues of my husband I did feel particularly hard done by!

[JJackdaw]

lol olive, I like the quote. I'll stick to walking, there's not enough room in my flat to swing a cat leave alone a lump like me prancing about.

[fuzzybear]

Hello everyone, I too am off balance and have been for ages and now, at last and thanks to you, I have a reason for it. Its amazing how many disorders PMR causes. Sorry, not enough info: been diagnosed with PMR for a year, started on 15mg of pred decreasing 1mg a month and now at 3mg. After reading Pmrpro's response going to try and cut pills in half and reduce half a mg in the coming months.

[PMRpro Ambassador in reply to fuzzybear]

There is a thread with my "dead slow and nearly stop" reduction plan where you don't need to cut pills but spread the reduction over a few weeks. It is particularly useful as you get down to these very low doses. This is a link to it:

healthunlocked.com/pmrgcauk...

And you can buy pill cutters from any dispensing chemist - makes cutting a fiddly little pred tablets easier!

[fuzzybear in reply to PMRpro]

Thank you - going to get pill cutter today.